The Adult Congenital Heart Association (ACHA), the only organization in the country that specifically serves adults with congenital heart disease (CHD), has named Trawana Porter Community Development Coordinator for Greater Philadelphia. In this role, Porter will plan, implement, and lead local program and development initiatives, including patient and family education and support groups, CHD conferences, fundraising and volunteer activities, and overall community outreach.
In the past few weeks, I have heard from several constituents inquiring about the timing and location for the next ACHA National Conference, so I want to provide an update to our full membership.
The ACHA National Conference—our premier event that gathers both patient/family members and medical providers—has recently taken place every three years (2011 in L.A., 2014 in Chicago, 2017 in Orlando). Following that cycle, our next Conference year would be 2020, and that is the target we are working toward. However, we want to make sure there are enhanced opportunities for gatherings in the “off years” as well.
You don’t have to be in Washington, DC to advocate for CHD support. Contact your Senators today!
Senate Sign-On Deadline: Tuesday, April 3, at Noon
As Congress considers its Fiscal Year 2019 federal spending bills, ACHA asks that you urge your two Senators to sign the Durbin-Grassley Fiscal 2019 Appropriations Letter in support of funding for the CDC program to address the lifelong needs Americans with congenital heart defects (CHDs). Members of Congress send letters outlining their funding priorities for the next year, and we want as many people to sign onto the letter as possible!
The Adult Congenital Heart Association (ACHA) has named Nicole Fernandez Community Development Coordinator for Greater Boston, re-establishing a formal presence in the city where it was founded 20 years ago by a young woman who sought support and resources related to congenital heart disease (CHD). In this role, Fernandez will plan, implement, and lead local program and development initiatives, including patient and family education and support groups, CHD conferences, fundraising and volunteer activities, and overall community outreach.
As we anticipate the start of spring next week, I want to take a few minutes to look back and congratulate all ACHA members, advocates, donors, and staff on an amazing Heart Month 2018! You did an outstanding job helping to spread CHD awareness and the importance of lifelong care throughout February by sharing our social postings at a record rate. Combined across all platforms, our postings reached an astounding 8 million people during Heart Month, and our Facebook, Twitter and Instagram followers increased by more than 1,000 people. Way to go!
As you read this, nearly 200 fellow advocates are on Capitol Hill meeting with their Members of Congress as part of the 2018 Congenital Heart Legislative Conference. They are asking their lawmakers to support research, data collection and awareness activities related to congenital heart disease (CHD). This includes recruitment of co-sponsors in the Senate for the reintroduced Congenital Heart Futures Reauthorization Act of 2017.
We need you to participate from home!
ACHA Applauds the House of Representatives for Passing the Congenital Heart Futures Reauthorization Act
We applaud the House of Representatives for passage of the Congenital Heart Futures Reauthorization Act (CHFRA), H.R. 1222.
Congenital heart defects are the most prevalent category of birth defects, affecting nearly 1 in 100 babies; more than five percent will not live to see their first birthday, and those who receive successful intervention are not cured. Children and adults with congenital heart disease (CHD) require ongoing, costly, specialized cardiac care, and face a lifelong risk of permanent disability and premature death.
February is Heart Month and we’re asking all of you to help us spread awareness of CHD and lifelong care by sharing the items we post on our social media networks. Many of you do this already throughout the year, but we are asking ALL our members to take note of our posts this month and pass them on. You may have noticed that our theme for this year’s Heart Month is Empowerment: Taking Control of your CHD, which we hope resonates with all of you.
As part of ACHA's new Vision 2025, our guide for the future, we are excited to announce our new strategic plan for 2018-2020. ACHA recognizes the value in and responsibility for creating a meaningful multi-year strategic plan that will guide us to be the foremost resource for the CHD community. We worked to create a clear outcome by engaging our most critical stakeholders on this important journey.